Journey of our child from the perspectives of Pei Shan’s parents
Pei Shan was born on 5th August 1998 in Mount Elizabeth Hospital in Singapore. She had been a normal and healthy baby throughout my pregnancy and at birth.
We brought her to private clinics in Bishan e.g. Woon Baby Clinic (Dr. Woon Kai Yong), The Bishan Family Doctors (Dr. Tan) for all her immunizations and treatments for normal flu and fever.
At 4 months old, Pei Shan was hospitalized in KK hospital due to Stridor (high-pitched wheezing sound produced due to obstructed air flow in the airways) and doctors noticed that her limbs were shorter than expected. As a result, she was diagnosed with the possibility of having developed Mucolipidosis (inherited metabolic disorder affecting the body’s ability to perform normal turnover of various materials within cells). However, we were advised by Prof. Anne Goh to monitor her further as girls tend to grow slower sometimes.
In order to seek a second opinion about her growth and development, we consulted Dr. Wong Hock Boon at Thomson Medical Centre, which had since become the place we headed to for any medical consultation, treatment and immunization for Pei Shan. Again, Dr. Wong assured us to not worry about her physical growth as it was also important to ensure a healthy mental development. We were advised to interact with her more in order to stimulate her brain to learn and explore what normal children were exposed to.
At 6 months old, Pei Shan was hospitalized in Mount Alvernia Hospital for 2 weeks due to chest infection, where she was treated by Dr. Woon.
At 9 months old, Mummy resigned from work to devote maximum time to take care of Pei Shan. We enrolled her in Tumble Tots classes in Thomson Plaza so that she could interact and play with other children of her age.
As we switched from dual income to Daddy being the sole breadwinner, medical fees and hospitalization bills became too expensive for us to afford. Therefore, we went back to KK Hospital for further medical treatments.
At age 1, Pei Shan was hospitalized in KK Hospital due to lung infection. Due to her short stature, doctors considered a case of Mucopolysaccharidosis Type III (MPS III), which was again not accepted as a proper diagnosis as MPS III could only be detected in children of age 5-6 and her symptoms were entirely different from that of MPS III. Doctors carried out a thorough check on her aberrant physical growth but could not identify a cause for her condition. We were disheartened to hear that there was no medication or cure, even up till date.
At age 2, Pei Shan attended Margaret Drive Special School for about a year. We observed that she had been more prone to infections, especially in places with many people. As a result, we were forced to stop her from attending school thereafter. Every infection landed her in high dependency ward for close monitoring. We wouldn’t forget that grave incident when she was seriously ill. Her oxygen level dropped to zero and she turned totally blue. She was immediately admitted to Children’s Intensive Care Unit (CICU) where we nearly lost her. Such events happened to her not once, but twice. From then on, even a mild flu was life threatening to her and we had to observe extensive hygiene to minimize her risk of infection.
At age 3, Pei Shan developed Obstructive Sleep Apnea (obstructed air-flow in the upper airways during sleep) and Restrictive Lung Disease (restricted lung expansion, resulting in extra force needed in breathing; patient risked of insufficient oxygen in body). To ensure that she gets a healthy supply of oxygen, she had to be put on continuous positive airway pressure ventilation as well as home oxygen concentrator for 24 hours everyday. Whenever we brought her on outings, we had to bring along heavy tanks of portable oxygen supply. Besides, she also had mild Aortic Regurgitation (leaking aortic valve of the heart causing blood to flow in the reverse direction during ventricular diastole).
From then on, Pei Shan had been on regular follow-up checks by the respiratory physician and cardiologist.
Down the years, whenever KK Hospital received medical professors from overseas to study specialized cases in Singapore, Pei Shan would be called back to KK Hospital for them to examine. So far, all of them had never seen a child with such an exceptional medical condition. They even commented on her being so unique that there wasn’t a second child in the world with the same condition.
At age 5, Pei Shan’s vulnerability to infections made us worried about the widespread threat caused by the SARS virus outbreak in that year. Whenever she had to be hospitalized for her conditions, she was specially arranged to stay in an isolated ward which clearly put the risk of an interpersonal infection to the bare minimum. We were extremely thankful for such an arrangement that kept her unaffected by the epidemic, leaving us a huge sigh of relief.
At age 7, Pei Shan vomited periodically and was hospitalized twice in KK Hospital due to low potassium levels. From then on, her dosage of medication had to be increased to maintain a healthy potassium level in her body.
At age 11, Pei Shan was diagnosed with Glaucoma (damage to optic nerve due to increased fluid pressure in eye). She had to have eye drops everyday in hope of easing the pressure. The medicinal strength of the eye drop had to be increased whenever the preceding prescription failed to lower the pressure. When even the strongest eye-drop could not lower the pressure in her eyes, a surgery was necessary.
At age 12, Pei Shan was scheduled for a TCP surgery to improve her vision. Transscleral Cyclophotocoagulation (TCP) was a laser treatment to the eye to lower the internal pressure. Doctors had huge concerns over her body’s ability to manage the general anaesthetics (GA) required for the surgery. Although the surgery would take merely 5 minutes, it might result in serious complications that could call for a longer hospitalization. We were in a huge dilemma – on one hand, agreeing to the surgery would confer high risks to her health; on the other hand, she would be blind without the surgery. We were also told that the surgery might not guarantee a reduction of the eye pressure and even so, the effects might not be long-lasting. We agreed to the surgery, nonetheless.
During the operation, after the GA had taken effect, we were told by the surgeon that he had a lot of difficulty inserting the incubating tube down Pei Shan’s throat, and it was not encouraged to repeat such a process if need be in the future i.e. it might not be possible to have a second TCP.
Day 1 after the surgery, Pei Shan rested in the high dependency ward. We saw that she had been repeatedly spitting out her own saliva, occasionally stained with blood, as she had trouble with swallowing. Whenever she tried to swallow, there would be an unbearable burning sensation in her throat possibly due to the abrasion by the incubating tube during the operation. We observed this only when we tried feeding her the potassium medicine orally, and she couldn’t help but to tell us about the pain. As a result, the doctor administered the medicine via the intravenous (I.V.) drip. To witness all of this suffering definitely broke our hearts. In the morning of Day 3, Mummy placed her ear near Pei Shan’s chest and was heartbreakingly appalled to hear her immense efforts in breathing very heavily. Mummy checked with Pei Shan if she was alright and all she asked of was to be hugged by Mummy. As obedient and strong as she always is, she fought hard to bear with such discomfort and torture that a typical 11-year-old might make a fuss about. Mummy immediately approached doctors and asked for transfer to ICU, where her oxygen requirement was so high that the ICU doctors suggested the need to open a hole through her neck to her respiratory tract to help with her breathing. However and thankfully, our own doctor, Dr Anne Goh arrived at the right moment and denied the need to perform such a process, and recommended Ventolin Puff (6 puffs every 15 minutes). Indeed, Pei Shan got better and returned to high dependency ward. Once again, we heaved a huge sigh of relief. Here, the doctor who administered the GA paid Pei Shan a visit and pleasantly surprised her with a soft-toy as a reward for her bravery. She commented that in her 10 years of experience, Pei Shan was the most challenging patient she had faced and she was very glad that the GA was successful. She was discharged after 9 days, when normal people could go home right after the TCP surgery, a proof of how minor the surgery was.
One and a half year later, as expected, Pei Shan’s eye pressure went up again. Since a second TCP was not possible, our doctor suggested a major operation involving certain changes to her facial appearance as a last resort to counter the effect glaucoma was having on her vision. A second opinion from the eye specialist was against this operation as her heart might not be able to manage it. Moreover, Pei Shan did not want to do the surgery as well.
“I rather go blind, than to go through all the pain and torture to my body that an operation brings”, Pei Shan said.
Pei Shan is big enough to deserve the right of deciding what’s best for herself, and we definitely respect that.
At age 13, Pei Shan was found to have an overproduction of mucus in her airways, resulting in a lot of phlegm which she had to use up all her energy to cough out. Sometimes we even had to help her with the purging of phlegm by patting her on her sides and as she was doing so, she turned blue almost every time. As a result, we had to deliberately raise the oxygen level to a 6 from her normal 2.5. Hence we’d always have a huge oxygen tank as a standby for occasions like this where she had to purge the phlegm, which has been becoming as regular as once every morning. Doctors prescribed medicine to help ease the mucus thickening but our brave girl decided not to rely on the medicine and to cough out the phlegm on her own, which was highly encouraged by the doctor as well. This may just be another symptom from her undiagnosed condition but to us, it seemed to be a likely repercussion from the TCP surgery a year ago, as we were informed of the risks that the surgery might confer on her health.
At age 14, Pei Shan was hospitalized again for sudden breathlessness. Usually, her shortness of breath can be relieved via ventolin puffs, however, the frequency between each puff became very short and when the puffs did not seem to help anymore, we admitted her to the hospital. Doctors carried out several thorough checks on her blood protein level, heart condition and everything was alright. However, Pei Shan’s body was noticed to have developed slight edema and she was prescribed diuretics to reduce body swells. Also, she was discouraged from high salt intake in order to minimize water retention within her body.
There is, however, one lingering worry that haunts us from deep within – Pei Shan is our only child, and as she grows up, age catches up on the both of us as well. Who is going to take care of her, should anything happen to either of us? It definitely doesn’t take one only a few days to be able to know how to take care of her intricate condition. It took us so many years, one step at a time, to be careful of every single detail. Even so, Daddy, who has been working doesn’t manage as well as Mummy, who has been spending all 24 hours with Pei Shan every single day.
Nonetheless, we’re thankful for each and every moment we have with her and we do believe that there will always be a brighter tomorrow. We do not give up on our little angel.
Pei Shan’s artistic pursuits
Though born with the long history of medical conditions, our girl does have some bold artistic interests that she actively pursues. Pei Shan has been home schooled since young due to her medical conditions. Despite that, she is able to write, draw and colour very well. Above all, she loves music and dreams to learn to play the piano. It all started when Pei Shan tinkered with a small toy piano at the tender age of 3. We felt very fortunate when our friend started teaching Pei Shan how to play basic music on a keyboard when she was 8 years old.
Last December 2013, Pei Shan was invited to attend an audition which would permit her enrolment as a music student with the Beautiful Mind Music Academy (BMMA). Little did we realize that the audition on 25 January 2014 was the golden key that unlocked a whole new chapter in Pei Shan’s life.
Pei Shan’s Journey with Beautiful Mind Music Academy (BMMA)
BMMA is a free music program offered by Beautiful Mind Charity (BMC) for potential artists with disabilities to fully develop their artistic talents as professional musicians by undergoing training customised to their individual special needs.
BMMA’s music teacher, Ms Mary Yoon started teaching Pei Shan on 13 February 2014 at our home. The lesson was one hour per week, which gradually increased to twice weekly in preparation for the Beautiful Mind Charity’s Concert ‘Begining of Another Miracle’ on 19 April 2014.
When we asked Pei Shan if she was nervous, she would always reply “No”, with a confident expression. Her courage and enthusiasm in learning with Teacher Mary came as a very pleasant surprise. She would look forward to every lesson and diligently practise on her own for hours before the next lesson. We are very pleased to watch her become more self-disciplined and determined in learning music.
What really took us by surprise was her ability to perform on a grand piano confidently on the day of the concert at School of the Arts (SOTA) alongside many passionate and talented musicians.
“As Pei Shan came onto stage, I could feel the whole aura of pride radiating from my family. Her tiny palms moving so agilely from one key to another on the grand piano as she calmly performed her piece. In another duet with her music Teacher Mary, Pei Shan made me grin widely and silently shouting, HEY THAT’S MY COUSIN. I’m sure last night meant the world to her, as I’d completely understand when I had my first stage performance in 2004”, said Pei Shan’s favourite cousin, Yu Jing.
Everyone got so excited over her, but nothing would beat our jittering nerves. As her parents, we felt so proud to witness her perform in her first concert. After her performance that night, it moved us deeply as our little girl played her heart out for us. She told us she wanted mummy and papa to enjoy her performance. We want to thank BMMA for giving Pei Shan this learning opportunity and Teacher Mary for her dedication and love in teaching her. It is our hope that Pei Shan will continue in her music education and fulfil her dream as a musician one day. We want Pei Shan to continue playing beautiful music and contribute to the society. She is the sunshine in our lives whom we want to share with others. We knew that was a great night for Pei Shan when she clapped her hands and said “Mummy, I am happy!” Unafraid of the stage, she added “I want to play for thousands of people!”
Apart from her music pursuits, Pei Shan draws actively in her free time. She wishes that the beautiful art pieces she had drawn over the years can all be published into a book, each with a short meaningful caption. Drawing has always brought joy to her life and she hopes to spread love and smiles to others through her drawings.
Pei shan has turned 16 this August. We are thankful for her positive outlook on life despite not sharing many opportunities that other healthy teenagers of her age get to experience.
As the parents of Pei Shan, our only hope for her is to stay healthy and be happy everyday. Simple joy and health is bliss.
Pei Shan passed away peacefully in her parents’ arm on 19.07.2016.
The parents wish to thank everyone who prayed for the family and especially those who visited them at KKH to encourage Pei Shan during this period. They would like to express their sincere gratitude to all the donors who donated to them the past 8 days. The funds will go to the family helping them in whatever possible way it can.